The EspeRare Foundation and Pierre Fabre Group announced that EDELIFE, the clinical study of a treatment for XLHED, has begun! Learn more about the ER-004 treatment and if you are eligible to participate in the trial.
Where Can You Turn When You Need Support? The NFED Of Course!
At 18 months old, Asher wasn’t showing signs of teeth development. Dental x-rays confirm that he has two upper teeth that have not ruptured, and those tooth buds are conical in shape. He has no other tooth buds present. This otherwise happy and healthy little blonde boy also has sparse hair, eczema flare ups, and he can’t produce sweat from his neck up. All classical signs of hypohidrotic ectodermal dysplasia (HED).
XLHED Clinical Trial One Step Closer to Launching
Today, we received fantastic news for x-linked hypohidrotic ectodermal dysplasia! EspeRare and Pierre Fabre announced that the ER-004 clinical trial is posted on ClinicalTrials.gov. Find out what that means and how it impacts our XLHED families.
The Power of a Mother’s Love
The Nelson family was committed to getting their unborn son a potentially life-changing treatment for his XLHED. But, that meant traveling across the world-twice-in the middle of a pandemic! Learn more about their incredible adventure and how their son is doing.
Kannon’s New Love to Crunch, Smash and Chew
This story follows-up on Kannon Koser and how he’s adjusting to his new denture! Find out how it’s impacted his speech and eating and what his parents did to get him to wear it.
Leaving My Comfort Zone to Advocate For My Family
As a self-described, shy, introvert, Sarah Ward could never have imagined that she would be meeting with Congress to talk about her family’s rare genetic disorder. The passionate advocate shares her journey and why she has found the strength to speak up!
What I Learned from My Three-Year Dental Treatment Journey
Jamie Sommerville shares her best tips for how to get your insurance company to cover the dental treatment you need. Plus, learn what NFED resources made all the difference.
Pregnant Mom Travels Around the World For Her Unborn Son
A mom’s dream to give her unborn son working sweat glands sent her on a journey around the world during a pandemic. Watch this video to hear her story and the treatment for x-linked hypohidrotic ectodermal dysplasia they received.